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It was a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my right eye. Then came rapid shocks, like lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe pain behind a single eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a